Ineernaticbna! Polio Netavork Now called SAINT LOUIS,MISSOURI USA post-Polio1 H~a7fh Spring 2001 a Vol. 17, No. 2 Breathing Problems o io Survivors i the diaphragm is weak. Conse- i quently, a weak diaphragm has I difficulty sustaining adequate breathing, especially when lying down. This leads to a decreased 1 level of oxygen in the blood, or Sa02 desaturation. Sa02 desat- / urations can extend into non- REM sleep and contribute to arousals, inducing sleep frag- Haw did acute poliomyelitis Now does respiratory muscle mentation, and decreasing the affect breathing? What is weakness affect breathing? amount of time in REM sleep. bulbar polio? What is spinal The diaphragm is the key muscle The quality of sleep deteriorates. polio? for inspiration (breathing in). What are the signs sf When it is weakened by polio, The poliovirus affected, in many breathing problemst different patterns, the nerve the work of breathing becomes A polio survivor experiencing cells in the lower brain (bulbar) harder, especially when a person a combination of any signs and and spinal cord that control is lying down. With each breath, symptoms in the following list the muscles of the body. Polio- the abdominal contents have to should immediately seek a respi- virus does not damage the lung be pushed down, but when sitting ratory evaluation, preferably by tissue or. the nerves to the air- upright, gravity assists the dia- a pulmonary physician way muscle. phragm by pulling the contents (pulmo- down. Polio survivors, especially nologist) with experience in When the bulbar nerves were those with scoliosis, compensate newomuscular disease. destroyed (bulbar polio), the m us- by breathing faster but more z Shortness of breath on cles of the throat were weak- shallowly because they lack the exertion (dyspnea) This resulted in choking ened. muscle strength to stretch a stiff during eating and a diminished i o Need to sleep sitting up rib cage. They may also have ability to cough. (orthopnea) smaller lung volumes that further 2 Retention of carbon dioxide When the spinal nerves were reduce respiratory muscle effi- affected (spinal polio), muscles ciency and drastically increase i (C02) of the arms and legs, and the work of breathing. This can i - morning headaches trunk muscles needed for lead to underventilation and - poor concentration and breathing and for taking a deep respiratory failure. impaired intellectual function breath for coughing were weak- i ;I Sleep disturbances ened. Polio survivors may have Haw does respiratory muscle weakness affect sleep? -not feeling rested in the had some combination of bulbar morning and spinal polio. so there may Respiratory muscle weakness CONTINUED ON PAGE 2 be corresponding throat muscle contributes to sleep-disordered and limb/respiratory muscle I breathing. During REM (rapid weakness. Involvement of the / eye movement) sleep, relaxation upper part of the spinal cord j of many voluntary muscles. weakened the key breathing 1 including the shoulder. chest. muscles - the diaphragm and ) and abdominal muscles, often chest musculature. f occurs. And, these muscles are 1 used to assist breathing when - sleepiness during the day should be aware of potential is not immediately aware that - dreams of being smothered problems. Those survivors who anything is wrong, and a treat- and/or nightmares did not need ventilatory assis- ing physician may not recognize - restless and/or interrupted tance during the acute phase, the signs or be familiar with sleep but who had high spinal polio the option of home mechanical resulting in upper body weakness ventilation. The person's spouse - fatigue or exhaustion from and/or diaphragm weakness, or family should be questioned normal activities and those with scoliosis (some- about signs and symptoms, - snoring times referred to as chest wall changes in activity levels and 2 Claustrophobia and/or feeling deformity) may also be at risk. breathlessness, and sleeping that the air in the room is patterns. Other factors contributing to somehow bad breathing problems are asthma, Additionally, facing breathing 3 Anxiety COPD, smohng, obesity, and difficulties can be frightening, 2 Difficulty in speaking for more sleep apnea: either central, for both the survivor and their than a short time obstructive, or mixed. loved ones, and there can be a reluctance to address them. o Quiet speech with fewer words Another compounding factor is Sometimes this fear stems from per breath diminished vital capacity (VC), inaccurate information about which happens to everyone as o Use of accessory muscles to the problem and the solutions they age. breathe or from earlier polio-related 2 Weak cough with increased Why da these problems experiences. susceptibility to respiratory aften go unnaticed? infections and pneumonias The reasons are varied and can The alveoli in the lungs are tiny be complex. The onset of respi- Are all polio survivars at risk air sacs at the end of the respi- ratory problems is insidious, and for breathing problems? ratory tract where gas exchange this gives an individual time to with the blood occurs. In under- No. Individuals who used an become accustomed to each ventilation (medically known as iron lung, or barely escaped decrease in function. Thus, one one, during the acute phase chronic or global alveolar hypo- ventilation), the saturation of oxygen in the blood falls due to / Contributors to Underventitation in Polio ~urvivbrs ! increased carbon dioxide (CO2). Normally the alveoli should clear most of the C02 out with each breath. Instead, the C02 accu- mulates (called hypercapnia), and thus there is decreased room in the alveoli for oxygen. Hypercapnia and decreased oxygen saturation are the hall- marks of underventilation or hypoventilation. The signs and symptoms of underventilation usually appear first during sleep. Some people seem to suddenly experience life-threatening respiratory failure due to C02 accumulation (hypercapnia). They may not have been aware of gradually increasing symptoms and signs, particularly since With special thanks to Judith My appreciation to Tony Oppen- they are often not physically Raymond Fischer, volunteer editor heimer, MD ([email protected]),and active nor regularly monitored of IVUN News, this issue of Polio to ventilator user Linda L. Bieniek with simple pulmonary function Network News features the breathing for their insightful reviews. tests. Polio survivors may think problems of polio survivors. We all struggled with what to that they are breathing fine until Why dedicate a whole issue to include and how to explain a com- an upper respiratory infection? this subject? plex topic briefly and simply - one which makes breathing in harder #I A common misconception about that really may apply to you. for everyone, causes serious home mechanical ventilation is that -Joan 1. Headley, MS problems, partially due to an it is the same as being in an ICU - Executive Director, GIN1 ineffective cough and the inabili- unconscious, intubated, and con- ty to eliminate secretions. nected to a large hospital ventiia- tor - as depicted on popular med- Who is the most quaiified ta ical TV shows. Using a ventilator at evaluate breathing problems? home is very different, as described Astute family physicians will by polio survivors Jean Davis and order a referral to a pulmonolo- Marion Gray (beginning on page gist, preferably one experienced 9), who sent photographs of their in neuromuscular disease. Pul- satisfied and well-ventilated selves. monologists specialize in all #2 It is the one aspect of the late breathing-related disorders, effects of polio, besides swallowing, however, most focus on more that could be potentially life- acute problems such as intensive threatening. And, in my travels, care. The pulrnonologist who I continue to hear stories from focuses on neuromuscular dis- polio survivors who have breath- eases understands that the prob- ing difficulties. lem is due more to respiratory #3 1 know many polio survivors muscle weakness and the restric- who now use nighttime ventilation tive nature of the disease rather and feel so much better, but their than the lungs themselves. pathway to this relief was through The IVUN Resource Directory the emergency room. I believe our compiles a list of pulmonologists Network is obligated to provide knowledge to prevent this from and respiratory health profes- happening to others. sionals who are knowledgeable about and committed to home #4 This issue is a good way to care and long-term mechanical educate polio survivors who, in ventilation. It is available at turn, can educate their doctors. I www.post-polio. org/ivun. html have heard the comment,"l am or in hard copy from not having breathing problems. International Polio Network. The physician checked my lungs and they are fine." Or,"The physi- What tests wilt a cian checked my breathing and pulmonologist order? said it isn't bad enough yet and he didn't think I would want to use a Pulmonary function tests can ventilator this young." be performed in a physician's office with a simple spirometer #5 The decision about the type of (an instrument for measuring ventilation to use and when it will the capacity of the lungs) or begin should be made in collabora- tion with your doctor and your in a fully-equipped pulmonary family.The purpose of this Polio function laboratory. Network News is to ensure that the CONTII\IUED ON PAGE 4 decision is an informed one. Pouo NETWORKNEWS I SPRING 2001. VOL. 17, No. 2 3 Pulmonary function tests should j blood and assesses pulmonary 1 What is sleep apnea? include: gas exchange. A noninvasive Defined as the lack of breathing Vital capacity (VC) both sitting measurement of oxygen satura- through the nose and mouth for and supine (lying down), FVC, tion in the blood is pulse oxime- at least ten seconds, sleep apnea FE V1. VC measures the total try, but it is not as complete or can be obstructive or central or volume of air one can breathe sensitive as an ABG.